Ch 10 – Second Opinion

Original post 5/6/08

We meet Dr. Khalil, Mon. Dec. 24th. After introductions, relating some medical history, recounting the events that led to my diagnosis, & a physical exam, we learn more new information.

Dr. Khalil attempted to bring up my PET scan on the computer in the exam room but is unable to do so. He says he will have radiology bring it up later that day so he could look at it; the written report is so detailed that he is able to see the extent of the metastases of my cancer from this report. He starts by telling us that there is a “standard of care” for stage I and stage II cancer, but there is no “standard of care” for stage III or stage IV cancer.

We tell him Dr. Patel told me the mastectomy surgery, which had been scheduled for early January, is off. He recommends chemotherapy. I am scheduled to have a mediport inserted Thursday, so that I can begin chemotherapy the 1st week of January.

Dr. Khalil says there is no right or wrong approach; there are merely different approaches to treating stage III & stage IV cancer. With this in mind, we ask what he would recommend. He shares his recommendations but also tells us that they are subject to change based on a more comprehensive review of my medical records, since he did not have a chance to review them, in detail, prior to meeting with us.

To summarize, he says he would add the drug avastin to the chemotherapy. It is a newer drug, which some oncologists are not comfortable using because they do not think there is enough data to support its use. He is comfortable with the amount of data available & with the results he has seen, as he has used it with his patients. It is a target therapy drug; however, he is concerned over whether or not I am a good candidate for this therapy, given my history of ulcerative colitis & some possible side effects of the avastin. If a further review of my medical records shows I am a poor candidate for avastin, his 2nd recommendation is hormonal therapy, since my cancer is hormone receptor positive. We have never heard of this before; so, he briefly explains it to us. (Even though I had my ovaries removed, when I had a hysterectomy, & I stopped the HRT [hormone replacement therapy], my adrenal glands & fat tissue still produce some estrogen. My cancer is estrogen receptor positive, which means estrogen stimulates the growth of the cancer). A drug that lowers the production of estrogen is used. I ask how hormone therapy kills the cancer, & Dr. Khalil explains that it starves the cancer. That makes some sense. He goes on to say that if we lived in Europe this is where we would start, with therapy & use chemotherapy as the back-up, if & when the hormonal therapy failed; in the United States we start with chemotherapy & follow-up with hormonal therapy to prevent reoccurrence.

Steven asks Dr. Khalil what my chances of survival are. He does not want to answer this question, because the statistics encompass such a broad spectrum of cases, over a long span of time & include patients of a wide age span. However, Steven explains that he is very aware of the nature of statistics & presses him for an answer. After some give & take, Dr. Khalil concedes & says that “statistically,” I have about a 20% chance of surviving longer than 5 years. I see the color drain from Steven’s face, as he tries to hide his emotion. (Actually, I later read medical research articles about my type & stage of cancer & find that Dr. Khalil doubled the upper end number. In the research, the statistics are a survival rate of 5–10% after 5 years.)
Ed asks Dr. Khalil what I can do to increase my odds of living longer.
Throughout our time together, I notice that Dr. Khalil is very observant of our interactions between each other & with him. He is very friendly, & we feel very free to express our true thoughts & feelings. I think he creates a very comfortable atmosphere. We share with him that we are Christians & that we support one another as a family & that we have a strong support network both at work & within our church family. He tells us that he is also a Christian & explains that he can see that we are supportive of one another. He expresses how important a strong network of support is for a cancer patient. He also was impressed by my positive spirit & my ability to give him direct eye contact as I speak with him & answer his questions. He talks about what a great benefit this is for me, along with my faith. I tell him that I have more than a thousand people praying for me, & he tells me not to forget to pray for myself & to pray for my doctor to have wisdom to know how to treat my cancer.
I tell him that I did do this.
He says because we are Christians he will tell us a story. He asks if we know the story of Jesus raising Lazarus from the dead. We do. He says, “When Jesus arrived at Lazarus’ tomb he asked to have the stone taken away before he raised Lazarus, even though Jesus was able to move the stone. He didn’t need anyone to move the stone, but he asked the onlookers to participate in the miracle He was about to perform.” Dr. Khalil impresses upon us that Jesus sometimes asks us to participate in the work He is doing in our lives.
To this end, Dr. Khalil recommends that I do everything my doctors tell me to do.
He, also, recommends that I get regular exercise, such as walking 20 minutes every day.
Dr. Khalil tells us he will review my medical records, in more detail, & call me if he sees anything that changes his mind, with regard to his recommendations.
I ask him if he will call Dr. Patel & speak with him about his recommendations, & he assures me he will.

On our way out of the building, I can still see the deep concern on Steven’s face. Speaking the words aloud to him will be the reminder to me that I need. I tell him that God has told me this isn’t a death sentence, & God doesn’t lie. I plan on being around for Parker’s graduation from grade school, high school & college. I also plan on being around when he gets married.

Steven’s response is, “I hope so.” I certainly can understand this response. He has not had the personal encounters with God that I have had that have given me a “peace that transcends understanding.” Some things “rock the peaceful boat,” but it never overturns. Praise God! I hope & pray that God will give Steve a sense of His peace that I will survive for a long time.
I also reassure Steven by promising, “I will do anything the doctors tell me I need to do!”
We did learn a lot of new information to share with Dave & Lisa & with Kristy when we returned home.
Steven & Kelly left for home later in the afternoon.
Dave & Lisa have to leave as soon as we get home, for another family commitment; so, we do not get to fill them in on the details, of the appointment, until later that evening.

As I am telling Kristy about the appointment, I realize that she doesn’t quite realize the severity of stage IV cancer that has metastasized. I told her that Steven asked Dr. Khalil about my chances of survival & the give & take that took place, before he finally gave a percentage. I tell her that he said there is about a 20% chance I will survive more than 5 years, but I quickly add that God has told me this is not a death sentence. And God doesn’t lie. We both well up with tears & hug one another. I tell her I am going to make it, & she said she knows I will.

This is one of the hardest times as a parent – helping my children trust God when the situation looks hopeless to them, when my “peaceful boat of hope is rocking in some turbulence.” We learn difficult facts – we want our children to know the facts, but we don’t want them to live in fear. God’s given me peace & hope for the future; I want my children to experience it too. I can’t give them peace, but I can offer them hope. I want to hold out God’s hope in the situation; I pray they will grab onto it tightly & never let go of it. As they hold onto hope, I pray they will also begin to experience God’s peace.

Going to the Christmas Eve service with Ed, Dave, Lisa & Kristy is enjoyable & a much needed distraction, even though I remember having to force myself to go. (I guess I was on emotional overload.)

Upon returning home, we see the message light flashing on our phone. When Ed checks it, he finds that Dr. Khalil called right after we left for church. He looked over my records after his appointments were over & noticed something he wants to talk to me about. He says he will call me back first thing Wednesday morning, since he knows I have an appointment with Dr. Patel Friday afternoon. Of course, we wonder, what was he going to tell us?

When we have the opportunity to talk with Dave & Lisa about the appointment, Lisa wants to know more about hormone therapy. She does an internet search. This helps us to learn more information & to formulate questions for our appointment with Dr. Patel. There are 2 types of hormone treatment, but we need some further clarification. As Dr. Khalil explained, hormone therapy can be used after chemotherapy, to prevent reoccurrence, or it can be used 1st, & chemotherapy is saved as a back-up, to be used if & when hormone therapy fails. She also looks up information on ulcerative colitis & colon cancer to see how it is treated. Is it treated with chemotherapy? We wonder, is my immune system able to withstand chemotherapy? We come up with several other questions. This research & questioning is really good preparation for the Friday appointment.

Early Wednesday morning, Dec. 26th, Dr. Khalil calls to tell me that in reviewing my medical records, in more detail, it is apparent that my ulcerative colitis is worse than he thought it was. I am not a candidate for avastin. In fact, I am not a good candidate for chemotherapy, due to the extent of my ulcerative colitis. This makes my immune system too vulnerable; I would probably not be able to tolerate chemotherapy. In his opinion, I am a much better candidate for hormonal therapy.

I thank him for everything he has done & ask if he has called Dr. Patel or if he is going to call him. He says he is going to call him right after he hangs up from talking with me.

We take the completed pile of medical history, medical release forms & miscellaneous paperwork to Dr. Powers’ office & drop it off that morning.

Next, Ed & I are off to see Dr. Patel, on Friday afternoon. Dave & Lisa are going along on this visit. We have many more questions we want to have answered. Is there even more we can learn? Which form of treatment will I have? Dave & Lisa are praying with us for Dr. Patel to have God’s wisdom to know what is best for me.